Masha update 1and 2

I received this letter from Joni Beth Bailey. Just to fill you in, Masha is a small child that was adopted from the Ukraine by a couple in Father Gary’s parish. She has issues with extremely bad scoliosis, and it is affecting her internal organs. Her parents were taking her to Utah for experimental surgery to insert rods so that her body will be able to grow more normally. As you can see from the following letter they have had quite an adventure already! Please keep Masha and her parents in your prayers.
Thanks!
Marie

Hello everyone!
I am sitting at Masha's bedside in her room at Primary Children's Medical Center in Salt Lake. The last few days have been extremely crazy and completely exhausting-- this is the first chance I have had to update everyone, so please bear with me-- there is a lot to tell and this e-mail may get a little long.

We left Friday afternoon at about 2:00 p.m. Everything went smoothly and we drove through the night as planned. At about 4:30 (ish) a.m. we stopped at a rest stop in eastern Colorado. A light snow had begun to fall.

That's when things began to get hairy. As soon as we got back onto the interstate, the wind picked up. And the snowfall became heavier. After only a few miles, we were in a blizzard. Shortly after that, the snow and wind were so bad we could not see the hood of the van. We were in a complete white-out. We contemplated stopping, but there was no where to stop. Sitting on the side of the road seemed a dangerous option, so we slowly moved on. We knew from the mile markers that we were within 5 miles of Limon, CO, a town of decent enough size that we would be able to find a hotel. We crept along trying to get into Limon, following the barely-visible lights of a semi-truck just a few feet in front of us.

When we were approximately 3 miles from Limon, the semi-truck in front of us just stopped. Another truck was on our right, and huge snow drifts had accumulated to our left, so there was no way to move any further. We were stuck in the middle of I-70. We placed the car in park and sat there, with the engine idling and the heat on, watching and wondering what to do next. The truck on our right, which was to the north of us, helped to block the winds that were coming from the north, but our van (a full-sized converison van) still swayed constantly.

Remarkably, we had cellular connections, so we were able to make calls and use Mike's computer to try and get updates on our situation. The reports were not good-- I-70 was closed from Denver to the Kansas border. The winds were between 50 and 60 MPH. We heard estimates that the storm would be over anytime between noon and 4:00 p.m. We had first stopped between 6:00 and 6:30 a.m.

I began to worry that we would run out of gas. We figured we had about 2/3 of a tank, but our gas guage had been unreliable for a few months. We began to call around and search the internet to try and find out how long we could idle before the tank ran dry. While many people THOUGHT we'd be okay, no one could say for sure.

Around 2:00, someone knocked on our driver's side window. It was a rescue firefighter, and once he saw how many people we had in the van, he said he'd move us "up the list." However, he also told us that there were 5 semi's blocking the way that would have to be moved first.

A little over an hour later, shortly after 3:00, we were startled by someone clearing the mountain of ice off our windshield. Suddenly we could see the semi in front of us again, and it was moving! While Mike talked to the rescue worker, I hurried to get the kids buckled into their seats. The rescue worker told us we could only go as far as Limon, because the interstate was still closed. We drove those few miles over a thick layer of ice that was bumpy and eroded by wind.

The first thing we did when we got to Limon was stop for gas. Remarkably, we were able to calculate that in over 7 hours of idling, we had only used 5 gallons of gas! The roads in Limon were fairly clear, but the winds were still strong and snow was blowing everywhere.

We got a room at the Best Western and then began searching for food. All of the fast food resturaunts were closed-- McDonald's, Arby's, even the truck stop across the street from our hotel. We finally heard from another hotel guest that the Pizza Hut down the road was open, but could not deliver because the building was surrounded by dnow drifts 4 feet deep. Mike got us settled into the room and then headed out in the awful weather to bring us some food. We gobbled up the pizza, took the kids swimming in the indoor pool, and then went to bed by 7:45 p.m. An amazing thing happened that night-- when we told the kids to "roll over and go to sleep," they actually did!!

I awoke the next morning at about 3:30 a.m. I looked out the window of our hotel and could see that the on-ramp for I-70 was still barricaded. I was SO dissappointed-- how would we ever get Masha to her surgery on time??? I called the Colorado road conditions hotline, and learned that only I-70 EASTBOUND was closed-- westbound was open to Denver. WOO HOO!!! In my stirrings, I had awoken Mike, so I told him the good news. He rolled over to go back to sleep, but a few minutes later said we should get up and get going. I agreed. We got everything packed, got the kids up and dressed, and took advantage of the hotel's continental breakfast, which, thankfully, started at 4:00 a.m. We were on the road by 5:15.

The rest of the trip was rather uneventful-- we arrived at my parent's house in Payson, Utah, around 6:00 p.m. Sunday evening. After having a little dinner, my dad offered to drive Masha and me to Salt Lake (an hour away) for Masha's pre-op labs. I was so exhausted, I jumped at the chance to not have to drive. We got Masha's blood drawn and were back to Mom and Dad's at about 10:30. We got to bed around 11:00 p.m. Mike and I were both asleep before our heads hit the pillows.

Masha is stirring, and this is getting long-- I will make this e-mail a "part 1" and will write more later.

Hugs,
Sharee

UPDATE 2
I just got this from Joni:

Masha had 2 VEPTR's inserted in her back. One, a "hybrid," which Dr. Smith invented himself, went from the top of her ribs to the base of her spine. Another, traditional VEPTR, went from rib to rib. Dr. Smith told us that they used the smallest hybrid made, but that it still barely fit-- Masha is THAT tiny. He had to create a place for it to hook onto at the base of her spine, because she has additional unsegmented vertebra there. All in all, though, the operation went VERY smoothly, and Masha has a huge space in her thorax that she previously didn't have, which will give her lung more room to grow. She is also a little straighter than she was, though not much-- the point of VEPTRs is to correct the spinal curvature slowly over time (she will receive expansion operations every 6 months).

The first 45 minutes in the PICU were a little hard-- the moriphine drip wasn't hooked up yet, and Masha was in a lot of pain. She kept rolling around and telling us that her back hurt and that she didn't like this place. Once it was hooked in, though, she felt better. They were able to remove the breathing tube in the OR, so it was nice not to have to worry about that.

Masha was in the PICU for about 25 hours. She did so well that yesterday afternoon, they moved her into the room she is in now, and she'll be here until she gets released. I stayed in the hospital that first night-- they have parent "sleeping rooms" down the hall from the PICU. Priority goes to those whose kids are the most critical and those who have come from farthest away. I felt lucky to get one, as the PICU was full-- 32 rooms, but only 5 sleeping rooms. Mike came and took over just as they were moving Masha into a regular room (which has a chair that pulls out to a bed). I relieved him 24 (ish) hours later-- he is now at my parent's home with the girls.

Masha has a chest tube that is still draining more than the doctors would like-- but the drainage has gone down significantly in the past 24 hours. Her catheter, chest leads, and arterial line have all been removed. We are lifting her onto a commode when she needs to go potty, and she tollerates that well. Our biggest concern is still her pain management, but we have talked to Masha about how bad the pain needs to be before she pushes the button to increase her morphine drip. She pushed it about an hour ago when they changed her dressings, but that was the first time in several hours (and she can get up to 4 doses an hour).

Masha is on solid foods and is sitting up in bed. We are spending time watching TV, reading books, coloring, and putting together a puzzle. Masha got a real kick out of the e-mails she has received-- thank you very much for those!

Overall, she is doing GREAT, and we fully expect she will get released sometime this weekend.

Thank you everyone for your prayers and well-wishes. We have felt them and they have carried us through the difficult times.
Sharee